Multicentric Reticulohistiocytosis is a rare disorder characterized by the proliferation of immune cells, causing arthritis and skin nodules.
|Itching||One characteristic of this disease is a severe skin itching. All manner of drugs and lotions have been tried with no success. We found an anticeptic product called DETTOL helped the most. It seems to numb the skin. It may be used on its own, mixed 50/50 with water or even add a little baby oil to prevent the skin drying too much.|
We currently have MRH members from Canada, Brazil, Japan, England, Australia and in the United States. Checkout our website to connect with us and then we will contact you via email. Many of our members are also on Facebook. This is such a rare disease but we offer support to each other! Feel free to contact us! www.mrsupport.org
*Hello I wonder if the other colleagues, were vaccinated for influenza A H1N1. Were authorized by their doctors? Had any side effects? If you have not already made, do you intend to take? Light and Peace, Always* Alda Graciete March 20, 2010
I bearer Multicentric Reticulohistiocytosis. I'm Brazilian. I have had success with treatment and have managed to get away from crisis, but I Presevo enough, because any light makes my skin changed, so do not sunbathe, take care of household light bulbs, leave little homework, I can maintain a normal domestic routine. For two (2) years took the immunosuppressant Biological Remicade (infliximab), but a low immune causing a Herpes Zoster, stopped com.es biological Today I take daily prednisone, meloxicam and 1 day / week methotrexate 25 mg. Just had a great August/2004 in crisis, left me in bed for almost 3 months, but I have learned to live with her one and have a fulfilling life. I set a blog with information and although it is in Portuguese, with a help of Google today, we can translate any language. (Http: / / reticulo-histiocitose.spaces.live.com /) I would like to maintain contact with other patients or family members.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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